My name is Carrie.
I have five kids.
My second son, Jack, is diagnosed with autism.
Today, I’d like to explain the best way to talk to your child with autism about important matters. I have great wisdom and knowledge in this area.
Ha! Isn’t that funny? I have no idea how to talk to a child with autism about important matters.
You see, for the most, part, our life has been business as usual up to this point—no major health issues, or losses, or scary events.
Until now. Now, I have to have surgery to remove the parts of my body that grew and nourished over forty-five pounds of people. And that’s all I’m going to say about that.
When the doctor announced the need for surgery, the first thing that came to mind was how to tell Jack.
How would I explain the procedure, and the two-to-four week recovery where I wouldn’t be able to drive for a bit, where I would have to lie in bed and sleep in the afternoon and I could not answer all of his questions about Dr. Pepper and Sprite Zero?
Also, how much do I want Doug who drives his bus to know? And Paul, who runs the hot truck at school? Don’t forget random cashiers, bank tellers, mail carriers, and landscapers. Because once I tell Jack, I might as well take out an ad in the local paper.
Then there’s the anxiety—his tendency to, uh, think the worst possible thing could happen, especially in matters related to health and safety.
You know, like the time he demanded we go to the emergency room because his nose was stuffy and he could not breathe and he could suffocate in his face.
When was that, you ask? Well, about ten days ago.
And another thing. Let me just say that Jack is very, well, attached to me.
Wait, scratch that. I don’t know if he’s attached to me, exactly. It’s more that he orbits me. I like to joke that the umbilical cord connecting us at birth has never been fully severed. When we’re home together—and believe me, we are home together a lot—he’s rarely three feet away from me.
He likes to ask me questions about what I’m doing.
He needs to review his schedule a lot.
Before bed he calls for me ten, fifteen, sometimes twenty times.
Mom. For where. Are you.
I’m a little scared, to tell you the truth.
I guess I’d have to say, when it comes to talking to your child autism about a major life event, the first rule of thumb is to probably stay calm.
Also, don’t say things like rule of thumb because if your kiddo is anything like my son Jack, the expression will get lost in a tornado of confusion and before you know it, the entire conversation will be about why thumbs don’t actually make rules.
I decided to tell him one afternoon when we were taking the dog for a walk. It was kind of overcast, and our feet crunched over a few fallen leaves on the street.
Jack, buddy, listen. In a few weeks, I have to go in for some surgery.
At first, it was all about the practicalities.
Who will drive me. To the YMCA. For my swimming.
Well, we’ll figure that out.
If there is anything this boy of mine cannot tolerate, it’s uncertainty.
Figure it out. Right now.
So maybe the second rule of—well, the second rule would be to have all of your ducks in a row, so to speak, before broaching a scary topic with someone who has autism.
Have a plan.
Also, stop using expressions like ducks in a row.
I did not have a good plan.
We walked together for a few minutes in silence.
You could die.
Jack-a-boo, I am not going to—
If you die. For me. I will have no mother.
He’s not wrong.
What if something happens to me?
What will become of him?
Who will remember to refill his medication and buy the right kind of grape jelly?
Who will understand the way he loves from afar—the precious value in his occasional one-armed hugs?
Who will know him the way I do?
I’ve said it before, and I will say it once more: autism strips life down to the essentials. Time and time again, this bell curve disorder shines it’s bright light upon the heart of the matter.
When it comes to Jack, there is no, shall we say, finesse. He has no ability to sugarcoat the obvious. It is both refreshing and maddening all at once.
What if. You die.
Images flash across the screen in my brain in Technicolor, Imax, 3-D with plastic glasses.
My oldest son graduating college, his long, lanky silhouette crossing a sunlit stage.
My lovely daughter, all in in white.
My middle boy—the one with the dark hair and chocolate eyes—calling to announce he and his wife are expecting a baby.
My youngest child Henry, so full of life and tenacity and color and noise,
I cannot miss a moment of these people. They are too precious, and dear.
Buddy. I’m not going to die.
You do not. For know this.
I mean, how do I explain it all? How do I translate statistics and medical skill and outcomes into short conversation on an afternoon in early autumn?
I can’t. That’s the problem. There are no rules for this.
Please, will you do me a favor?
Yes, you. You sitting in your car or your laptop or at your kitchen table, reading these very words.
If something happens to me, will you tell my kids I love them?
Will you remind them that yes, I yelled in the mornings and sometimes I grit my teeth over dirty dishes in sink and many days, I was not my best self.
But I always loved them. I loved them so much I could barely breathe for the starkness of it all.
Tell them how I cradled them as newborns, and wiped their toddler noses, and saw them off on the bus in the morning, and did all the ordinary regular beautiful boring messy things that build a family.
Remind my oldest son how I clutched the side of the car door while he braked around the corner and I told my daughter a secret code word so she could always let me know if she was uncomfortable and together, we sat on the big red couch in the living room and ate popcorn and laughed at dumb movies until we cried.
And on the days when I stood hip-to-hip next to autism, I always saw the boy before the bell curve.
No matter what happens, I will always be their mother.